really frustrated! finding a doctor in boston?

[deerock]

ive tried 3 different sleep doctors, one at beth israel, one at MGH and one at St. elizabeths. none have been helpful. the most they have done is prescribe a cpap and send me for further testing.

its been a nightmare going through all the tests, using the cpap and not getting anywhere. i wear the cpap and my AHI is usually around 7 after 8 hours of sleep.

my first question is how can i research doctors properly to find a good one that will sit with me and think through the best options?

another question is how have people dealt with this kind of issue? its not clear what the problem is. i do know there is something up with my breathing even when awake, my throat closes easily and i get panicky but there is no real diagnosis for this. i have mild asthma but treatment for that doesnt really change the issue.

thanks for your help.

[49er]

ive tried 3 different sleep doctors, one at beth israel, one at MGH and one at St. elizabeths. none have been helpful. the most they have done is prescribe a cpap and send me for further testing.

its been a nightmare going through all the tests, using the cpap and not getting anywhere. i wear the cpap and my AHI is usually around 7 after 8 hours of sleep.

my first question is how can i research doctors properly to find a good one that will sit with me and think through the best options?

another question is how have people dealt with this kind of issue? its not clear what the problem is. i do know there is something up with my breathing even when awake, my throat closes easily and i get panicky but there is no real diagnosis for this. i have mild asthma but treatment for that doesnt really change the issue.

thanks for your help.

Sent you a PM.

[DreamStalker]

Doctors are generally pretty good at diagnosing sleep apnea and prescribing CPAP but more often don't have a clue about how to help the patient use the CPAP therapy. That's what this forum is for ... to help YOU take control of your therapy to make it work for YOU.

[deerock]

so what is a reasonable next step?

[DreamStalker]

so what is a reasonable next step?

If you've been Rx'd CPAP therapy, you need to learn how to make it work.

Start by filling out your profile and listing the equipment you have like CPAP machine, mask, etc.

If you have a machine capable of recording data, you need the software set up on your PC so that you can post images of your data so that others can help you adjust your machine setting if necessary. You need to make sure your mask leaks are mitigated if you have any.

Contact you doctor(s) and get copies of your sleep studies as well as a copy of your prescription(s).

[TASmart]

CPAP will not help your daytime issues, I suggest seeing a pulmonologist about that specific issue. CPAP stuff this forum is helpful, other issues its a crap shoot.

[deerock]

so what is a reasonable next step?

If you've been Rx'd CPAP therapy, you need to learn how to make it work.

Start by filling out your profile and listing the equipment you have like CPAP machine, mask, etc.

If you have a machine capable of recording data, you need the software set up on your PC so that you can post images of your data so that others can help you adjust your machine setting if necessary. You need to make sure your mask leaks are mitigated if you have any.

Contact you doctor(s) and get copies of your sleep studies as well as a copy of your prescription(s).

which software? my machine is a resmed s9. what software needs to be setup on my PC?

[DreamStalker]

so what is a reasonable next step?

If you've been Rx'd CPAP therapy, you need to learn how to make it work.

Start by filling out your profile and listing the equipment you have like CPAP machine, mask, etc.

If you have a machine capable of recording data, you need the software set up on your PC so that you can post images of your data so that others can help you adjust your machine setting if necessary. You need to make sure your mask leaks are mitigated if you have any.

Contact you doctor(s) and get copies of your sleep studies as well as a copy of your prescription(s).

which software? my machine is a resmed s9. what software needs to be setup on my PC?

Most members here seem to prefer Sleepyhead. Pugsy has developed a Tutorial for getting started here ...
viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html

Also, you can find the link up at the top on the main page of the forum -- where you will also find links to other great threads for people to read who are just starting out.

[Pugsy]

Which model ResMed S9? There's a long list of different S9 models. What does it say on the top of the blower?

Software....see this
https://sleep.tnet.com/equipment

You need to see what the AHI is made up of. There are 3 components to AHI....central index, obstructive apnea index and hyponea index.
Depending on what the AHI is made up of...maybe you just need some tweaks with the pressure to get the AHI to come down.
Maybe there's something going on that the pressure can't fix.

Since you are having problems you need to investigate further as to what is going on in detail each night. Using the software is the first step. This part isn't hard to do...it's not rocket science.
Let's see what is going on and then decide the best plan of action.
See this thread for examples of what you can see on the detailed nightly report.
viewtopic/t103468/Need-help-with-screen-shots.html

[ChicagoGranny]

CPAP will not help your daytime issues, I suggest seeing a pulmonologist about that specific issue.

For this issue:

even when awake, my throat closes easily

,

I recommend a consultation with an ENT/Allergist. Pulmonologists are experts in thorax and lung problems. deerock's problem seems to be in the upper airway. An ENT is well equipped to examine the upper airway, give an evaluation and make recommendations on surgery of tonsils, adenoids, sinuses or nasal passages.

At this point, the priority should be for deerock to use Sleepyhead, get involved in the forum and use members' help to determine if his CPAP therapy is optimized. If he thinks he needs to see an ENT, he could do that concurrently.

[TASmart]

CPAP will not help your daytime issues, I suggest seeing a pulmonologist about that specific issue.

For this issue:

even when awake, my throat closes easily

,

I recommend a consultation with an ENT/Allergist. Pulmonologists are experts in thorax and lung problems. deerock's problem seems to be in the upper airway. An ENT is well equipped to examine the upper airway, give an evaluation and make recommendations on surgery of tonsils, adenoids, sinuses or nasal passages.

At this point, the priority should be for deerock to use Sleepyhead, get involved in the forum and use members' help to determine if his CPAP therapy is optimized. If he thinks he needs to see an ENT, he could do that concurrently.

OK depends on where the throat "closes " I would not disagree with a ENT at this stage.

[ChicagoGranny]

OK depends on where the throat "closes "

For OSA, it is almost always where the soft palate and tongue collapse together. One exception would be the case of badly enlarged tonsils. Can't be sure why he gets the sensation of throat closing while awake.

[TASmart]

OK depends on where the throat "closes "

For OSA, it is almost always where the soft palate and tongue collapse together. One exception would be the case of badly enlarged tonsils. Can't be sure why he gets the sensation of throat closing while awake.

Since this is while they are awake, the definition of sleep apnea does not apply. that's why my initial thought was a pulmonologist. Could actually be a pulmonary spasm or COPD or asthma type of condition.

[ChicagoGranny]

Could actually be a pulmonary spasm or COPD or asthma type of condition.

Without good CPAP therapy, the body and mind are under a lot of stress. It could just be "in his mind". He needs to get his CPAP therapy optimized and get some good rest. A lot of symptoms might go away.

[TASmart]

Yes, I can recall at times just kind of feeling like my airway was blocked and needing to grab a full inhale of air during the daytime - stress related and for sure I am much calmer with the CPAP.